Before I Say Goodbye is a book publising the columns by Ruth Picardie, the journalist who died of breast cancer. It is a candid and humorous reflection on her experience as she reached the end of her life. It is inspirational in many ways and resonated with me when I read it years ago; before I was diagnosed with multiple sclerosis.

Today the parliamentary report from the Commission on Assisted Dying is headline news recommending MPs should consider changing the law on assisted suicide to allow some terminally ill people to end their lives at home with the help of their doctor. As one falling into the category of a chronic long term incurable illness I have a particular interest in the report from both a personal point of view and a wider humanitarian perspective. For me it is about choice; my right to choose the manner and timing of my exit stage left (or right) from this mortal coil.

Overall the recommendation that assisted dying should be offered as a choice to terminally ill patients at the end of their lives is progress (of sorts). However it is hard to see how the recommendations could have been more cautious. The benefits will, if approved, be accrued by a very small number of people. By the time the precautions and sanctions have been put in place it is hard to see how many people (diagnosed as likely to die in the next 12 months) will have the energy to garner the signatures needed. On the other hand perhaps the simple act of expending this amount of energy on the end of life checklist will be sufficient to make one expire; although ironic that would be awfully convenient. Of course if approved the patient would be able to solicit the assistance of a third party to pace the streets on ones behalf; assuming there is someone willing, able and trustworthy to engage.

I deliberately make light of the issue which is of course a matter of great import that should be approached respectfully. Baroness Finlay, the Cardiff based Palliative Care Specialist was interviewed on the radio this morning as she always is when the topic is discussed. She is an advocate of high quality end of life care with particular attention paid to pain management; laudable intentions but only a partial picture. Palliative care is about management; indeed good care can extend the patient’s life giving more time and a better quality of life. But it does not change the diagnosis; the patient is still going to die ultimately.

For me this is akin to being parked in a holding pen to wait; a padded cell from which to observe ones demise. For some, and some days I include myself in here, one questions the purpose of the waiting. Think about being in a position where your body disintegrates gradually, incrementally and to fellow voyagers almost imperceptibly slowly. And for good measure periodically, without warning (or reason), the decline accelerates taking a leap into a new abyss.

It makes planning a tad difficult; risk management almost irrelevant and the temptation to involve anyone else in the experience disappear. Hmm what now; what next one wonders? Like Alice in Wonderland falling down the rabbit hole one tumbles initially at speed gathering momentum before gliding towards a new level. As the momentum winds down one has time to pause to glance at the view; from a new perspective and cogitate on the implications.

The policy makers, care providers and specialists in the main manage your condition from an academic/text book perspective; few have a personal (direct or indirect) insight. When discussing the side effects of pain medication with my GP recently the conclusion was to get rid of the side effects I needed to reduce the quantity of drugs taken (really how nice of you to point out the blindingly obvious)! When I asked if what he meant was that I would need to learn to live with a degree of pain he said yes. As a well brought up individual I resisted the temptation to ask if he had any personal experience of chronic pain.

It is a conundrum; how to make social policy with wide ranging implications for citizens that benefits both society and the individual without being patronising or paternalistic. The vulnerable need to be protected of course, but who decides on the degree of vulnerability? Pragmatism from intelligent patients, following due consideration and a thorough appraisal of the options, should not be confused with undiagnosed depression or melancholia.

When considering the issue of assisted dying I ask you to reflect upon your life, the things that are important to you and that you value or cherish. Distil the essence of you; consider the impact of this elixir evaporating and losing its potency – how would you feel without this? It is difficult to envisage our lives without the enrichment that is derived from close friends and family. But would you want those special people to go through tremendous suffering to be there for you?

Over a decade ago someone I knew committed suicide by taking an overdose. She was found and taken by air ambulance to a specialist unit where she died. I often wonder what I would have done had I found her. Knowing her as I did, having an insight into how her life experience had damaged her and the pain she negotiated everyday to just exist, I like to think I would have had the courage to leave her in peace.

3 responses to “Before I Say Goodbye”

Its a very delicate subject – how you view it depends on so many things. Your own health, religious views, culture for a start..I think that it needs to be taken on a case by case basis. If you are in the situation where you are considering ending a life that has become to hard to bear ,and you are compus mentis then who can question or should question that.
I couldnt bear to be a burden and have no dignity or quality to my life.
Sometimes it goes beyond just managing physical pain..

Absolutely. It is a very personal decision and one that changes with experience too I find. And yes it is SO much more than pain management which is where Baroness Finlay and I differ. Respectfully there are of course room for both opinions me thinks.

Fran – Your post was very moving, poignant and eloquent. I want to respond, but am nervous of giving my views on any web site. However, if you have my full permission to post to same if you think fit!

I have read Ruth Picardie’s book. I knew her father, Mike Picardie, very well, when he was lecturing at UCC circa 1979 – his most notable play in Cardiff (Sherman Arena) was Jannie Veldsman – and I recall both of us crawling on the floor of the Sherman Gallery (as was) collating copies of the same from an ancient copier, prior to rehearsal. Both his daughters, Ruth and Justine were/are very talented writers. Google him – he is very interesting – a bit barking!

The PR on the Commission for Assisted Dying is a step forward, but flawed, of course. It will not help the thousands with dementia; it will not help many others will terminal illnesses but whose life expectancy is difficult for the medics to determine. I fully understand the views of those like Baroness Finlay, on palliative care, pain management etc but there comes a time when the biggest issue is quality of life – and on this one I have strong views and some experience, relating to the three people I love/d most dearly: two of whom are dead and the other very much alive.

In very different circumstances and places, I successfully requested that all treatment/medication be stopped and no resuscitation given to my mother (88 Parkinson’s with Lewy Body dementia/stroke in 2010) and to my husband John (56 with widespread fast moving cancer in July 2011). On both occasions, I had no qualms about the decision, but – very different emotions, obviously. I would not have been able to make these decisions any earlier than I did, however. In John’s case, the speed of deterioration was such it would not have been possible. In my mother’s case, I wish I could have acted earlier – she had no quality of life for the past 2 years of her life. Even when she had had the stroke and was in a coma, a locum doctor arrived and seeing her foot blackened by lack of circulation etc. said “well, really we should take in hospital to have it amputated”. Fortunately, she was in a wonderful care home, with staff who shared my views – having seen too many relatives send relatives close to the end to hospital, only to have them died on trolleys in corridors. And, of course, I had put a no resuscitation letter on my mother’s file from the day she went into the home in 2006. In happier days, she had always asked me to do this, in her own way.

Between 2007 – 10, my daughter (then in her late 30’s) made six serious suicide attempts; these were assumed to be generated by acute anxiety of forthcoming legal proceedings. At one stage, she was diagnosed at bi-polar. She even went to Switzerland and registered with Dignitas.. In fact. as we now know she was “driven” by mis-diagnosis of a range of mental illnesses by a range of shrinks – who between them prescribed increasingly high dosages of a lethal cocktail of medication. She would have died in a London hotel on the last attempt but for my tenacious (and hysterical!) phone calls. After being sentenced in and Holloway, she initially blamed me for not allowing her to die. And she had begged me in the previous years to sanction her suicide – to let her go. I would and could not. She was off all medication within a few months in Holloway; and thanks me – and Holloway – for our tenacity and belief.

I tell you the above as it reflects a few real and personal circumstances. And in the end in comes down to these; and this is what make it very difficult for legislation. How to draft a bill which covers everything. The flaw in the current PR is that is fudges the issues – as Fran says far better than I – ie. what about those who want to make their decisions clear, but whose prognosis may not be able to be determined as within 12 months; what about those with dementia (the growing numbers) who can be left for years, with no quality of life at all; what about those with MS or MND – who know what may be ahead of them; I would not want anyone I loved or cared for to go through indefinite or confirmed forthcoming suffering – providing it was not as case of “not coping/depression etc.”. And those in those circumstances need to have the confidence that they can decide – without subjecting those they love/who may help to potential legal charges.

It is a quagmire. But I remain of the view that we should listen to those who have mental capacity and are suffering from some of the relative illnesses; I worry more about those without the mental capacity, and maybe no loved ones who can face the issues and make the decision and fight the system. The latter issue will become worse in the coming decades as some of us live longer, and are subject to dementia. Those of us who understand and care about these issues must join forces and try to get the legislation better drafted. It is best lobbied as unemotionally as possible by those with experience of the issues – and those whose relevant illnesses demand their right to be heard properly. Go Fran – and there are many of us who will back you every step of the way!

Before I Say Goodbye is a book publising the columns by Ruth Picardie, the journalist who died of breast cancer. It is a candid and humorous reflection on her experience as she reached the end of her life. It is inspirational in many ways and resonated with me when I read it years ago; before I was diagnosed with multiple sclerosis.

Today the parliamentary report from the Commission on Assisted Dying is headline news recommending MPs should consider changing the law on assisted suicide to allow some terminally ill people to end their lives at home with the help of their doctor. As one falling into the category of a chronic long term incurable illness I have a particular interest in the report from both a personal point of view and a wider humanitarian perspective. For me it is about choice; my right to choose the manner and timing of my exit stage left (or right) from this mortal coil.

Overall the recommendation that assisted dying should be offered as a choice to terminally ill patients at the end of their lives is progress (of sorts). However it is hard to see how the recommendations could have been more cautious. The benefits will, if approved, be accrued by a very small number of people. By the time the precautions and sanctions have been put in place it is hard to see how many people (diagnosed as likely to die in the next 12 months) will have the energy to garner the signatures needed. On the other hand perhaps the simple act of expending this amount of energy on the end of life checklist will be sufficient to make one expire; although ironic that would be awfully convenient. Of course if approved the patient would be able to solicit the assistance of a third party to pace the streets on ones behalf; assuming there is someone willing, able and trustworthy to engage.

I deliberately make light of the issue which is of course a matter of great import that should be approached respectfully. Baroness Finlay, the Cardiff based Palliative Care Specialist was interviewed on the radio this morning as she always is when the topic is discussed. She is an advocate of high quality end of life care with particular attention paid to pain management; laudable intentions but only a partial picture. Palliative care is about management; indeed good care can extend the patient’s life giving more time and a better quality of life. But it does not change the diagnosis; the patient is still going to die ultimately.

For me this is akin to being parked in a holding pen to wait; a padded cell from which to observe ones demise. For some, and some days I include myself in here, one questions the purpose of the waiting. Think about being in a position where your body disintegrates gradually, incrementally and to fellow voyagers almost imperceptibly slowly. And for good measure periodically, without warning (or reason), the decline accelerates taking a leap into a new abyss.

It makes planning a tad difficult; risk management almost irrelevant and the temptation to involve anyone else in the experience disappear. Hmm what now; what next one wonders? Like Alice in Wonderland falling down the rabbit hole one tumbles initially at speed gathering momentum before gliding towards a new level. As the momentum winds down one has time to pause to glance at the view; from a new perspective and cogitate on the implications.

The policy makers, care providers and specialists in the main manage your condition from an academic/text book perspective; few have a personal (direct or indirect) insight. When discussing the side effects of pain medication with my GP recently the conclusion was to get rid of the side effects I needed to reduce the quantity of drugs taken (really how nice of you to point out the blindingly obvious)! When I asked if what he meant was that I would need to learn to live with a degree of pain he said yes. As a well brought up individual I resisted the temptation to ask if he had any personal experience of chronic pain.

It is a conundrum; how to make social policy with wide ranging implications for citizens that benefits both society and the individual without being patronising or paternalistic. The vulnerable need to be protected of course, but who decides on the degree of vulnerability? Pragmatism from intelligent patients, following due consideration and a thorough appraisal of the options, should not be confused with undiagnosed depression or melancholia.

When considering the issue of assisted dying I ask you to reflect upon your life, the things that are important to you and that you value or cherish. Distil the essence of you; consider the impact of this elixir evaporating and losing its potency – how would you feel without this? It is difficult to envisage our lives without the enrichment that is derived from close friends and family. But would you want those special people to go through tremendous suffering to be there for you?

Over a decade ago someone I knew committed suicide by taking an overdose. She was found and taken by air ambulance to a specialist unit where she died. I often wonder what I would have done had I found her. Knowing her as I did, having an insight into how her life experience had damaged her and the pain she negotiated everyday to just exist, I like to think I would have had the courage to leave her in peace.